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New book by
Mitzi Waltz,
Autistic Spectrum Disorders:

Autistic Spectrum Disorders

Other books by Mitzi Waltz:

Obsessive Compulsive Disorder

Bipolar Disorders

Adult Bipolar Disorders

Tourette's Syndrome

Autism Center

Direct and Indirect Financial Support for Families


The following excerpt is taken from Chapter 11 of Pervasive Developmental Disorders: Finding a Diagnosis and Getting Help by Mitzi Waltz, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Most people dealing with PDDs have plenty of practice when it comes to squeezing a buck. Some, however, are hard put to find a dollar to squeeze. Parents with challenging children and adults with serious difficulties can have trouble securing gainful employment.

There are some programs available that may provide you or your family with direct financial support. The checks will be small, but with careful planning they may allow you to give your child the gift of a home-based intensive program or allow you time to develop a career that meets your needs.

United States

The US stands alone in the civilized world as the only country that would rather pay strangers or an institution to care for a child than provide support for parents to do so themselves. While all Western European nations (and many others) provide family support allowances to encourage one parent to stay home with all young children, the US government has cut support even to single parents, and provides extraordinarily low allowances when they are available.

This policy affects the parents of children with disabilities particularly harshly.

Until recently, single, low-income parents of children with disabilities tended to receive Aid to Families with Dependent Children (AFDC, "welfare") and Social Security Income (SSI). When put together, income from these two programs permitted them to eke out a living well below the poverty line, but with some hope of obtaining adequate housing and food. For many of these families, the most important benefit was access to healthcare, as government health insurance (Medicaid) comes with both AFDC and SSI.

Welfare reform has changed this picture drastically. Many states have reconfigured AFDC as a short-term emergency support program. Most states have imposed stringent limits on AFDC programs, such as limiting assistance to once in a lifetime, insisting that parents work for their grants, or forcing parents into job-training schemes geared toward a rapid transition to low-wage employment. In some areas, exceptions are still made for single parents caring for disabled children, and AFDC caseworkers may be allowed a certain degree of discretion.

If you have a pervasive developmental disorder or other handicap and are parenting and receiving AFDC, this may work for you or against you. Some parents who have let their caseworker know about a personal neurological problem have been exempted from certain regulations. Others have lost their children. You should see a welfare rights organization or sympathetic social worker before making the decision to tell. They can help you ensure your children's security by approaching the issue correctly.

You can apply for AFDC at your county's Child and Family Services department. The program is primarily for single parents, but two-parent families are eligible in some areas and under some circumstances. The amount of the monthly grant varies. It is determined by the county government, which administers AFDC programs at the local level. Grants range from around $150 per month in some rural Southern counties to about $650 per month in expensive cities like San Francisco, where a small supplemental housing benefit is factored into the grant.

You'll need to provide very complete documentation to get and retain AFDC benefits on the basis of needing to provide full-time home care for a child. You can expect to have an eligibility review at least every three months, during which all of your documents will be reviewed and you will be re-interviewed. Generally speaking, you cannot have savings or possessions worth over $1,000, although you may own a home and a modest vehicle. You may be forced to sell a car or other valuables before you can receive benefits. Your AFDC grant may be reduced by the amount of other financial assistance you receive. If you find part-time work, your grant will also be reduced by this amount or a portion thereof--some states do have work incentive programs. Court-ordered child-support payments to AFDC recipients are paid to the county rather than directly to the parent, and your grant will be debited for these as well.

You may be eligible for food stamps, "commodities" (free food), and other benefits, such as job training, if you receive AFDC. People leaving AFDC may be eligible for certain short-term benefits, such as subsidized childcare and continued health insurance.

SSI is a federal program that provides a small monthly stipend for children and adults with disabilities that cause marked and severe functional limitations. Benefits range from around $300 to $400 per month for children or for adults living in another person's household to over $600 per month. More importantly for many, SSI recipients are also eligible for Medicaid, a federal health-insurance plan. As with AFDC, your assets and income from other sources will have to be limited, which can bring stress of its own as parents are forced to "spend down" any savings and let careers slide to become or remain eligible.

Staying able to get SSI and Medicaid has meant my husband could not get a better job because the pay would knock us out of contention for Medicaid. We don't care about the SSI, we just need Medicaid for therapy and vision coverage. --Holly, mother of three-year-old Max (diagnosed PDD-NOS and apraxia of speech)

Getting SSI may be one of the most difficult things you'll ever do. You apply at your nearest Social Security office, which can provide you with the paperwork and a current instruction book. You can also do a pre-eligibility screen over the phone (call the national Social Security hotline at 800-772-1213). The application form is extremely long, and requires copious documentation. SSI caseworkers and medical examiners seem to thrive on placing roadblocks in your way.

The SSI application process has become increasingly adversarial over the past two decades. You may get the distinct impression that the people interviewing you think you or your child is faking a disability--and your impression may be right. The Social Security department will order an Individualized Functional Assessment (IFA), which may include seeing more doctors as well as a review of your medical documentation. Your child may be interviewed and observed by a psychiatrist or medical doctor working for Social Security. You have the right to be present for this interview, although parents report that some doctors seem to want to exclude them from the process.

Most applicants for SSI are rejected on their first try. You do have the right to appeal SSI denial, however--and you should, because a high percentage of appeals succeed. In addition, successful appellants get a lump sum equal to the payments they should have received had their original application been properly approved. This sum can be several thousand dollars, and has helped many families fund things like more secure housing, wheelchairs, and other important needs.

If you need help with SSI (or, for that matter, with AFDC if you are applying primarily because of your own or your child's special needs), contact a disability advocacy agency (see Appendix B, Support and Advocacy). This agency can help you through the application process, and most can provide legal assistance if you need to appeal. Additional information about the program is available online (for adults or general information, www.ssa.gov/odhome.

SSI is usually an income-dependent program. If you are working and earn more than the regulations allow, your child will not be eligible for SSI. However, a special income-limit waiver is available to help families who have income but whose children have expensive medical needs. See Chapter 8, Insurance, for information on the waiver process.

Some states, large cities, private agencies, and Native American tribes also have income support programs. You may be eligible for one of these. A county social worker or tribal official should be able to help you find out if you qualify.

We receive assistance from a United Way program and some grant funds from the state Department of Mental Retardation. --Charlotte, mother of four-year-old Rory (diagnosed PDD-NOS)

Canada

Welfare is available in Canada for people with disabilities, single parents, and unemployed adults with or without children. The amount of the monthly payment is set at the provincial level. The disability payment varies from a low of about $580 per month in poor provinces like New Brunswick to around $800 per month in more expensive Ontario and British Columbia. Under the Canadian system, payments to parents caring for children, single or otherwise, are higher than those for disabled adults.

To apply for state welfare benefits, visit your nearest Ministry or Department of Social Services. For disability benefits, regulations vary by state. Generally speaking, however, you must be eighteen years of age or older and require, as a direct result of a severe mental or physical impairment:

  1. Extensive assistance or supervision in order to perform daily living tasks within a reasonable time, or
  2. Unusual and continuous monthly expenditures for transportation, special diets, or other unusual but essential and continuous needs, and
  3. Have confirmation from a medical practitioner that the impairment exists and will likely continue for at least two years or longer, or that it is likely to continue for at least one year and then recur.

There are limits on the amount and kinds of savings and other property that a person or family receiving benefits can have.

As in the US, welfare reform is a growing trend in Canada. Some states have introduced mandatory workfare programs for single adults and for some parents on welfare. These provisions generally do not apply to people receiving disability benefits, and parents caring for disabled children may be able to have welfare-to-work requirements waived or deferred.

Canadians who are denied benefits or who have other problems with the benefits agency can appeal its decisions to an independent tribunal.

Some assistance for people with disabilities may also be available at the federal level, or from First Nations (Native Canadian) agencies.

Other direct and indirect income assistance is available, such as subsidized travel and tax benefits. For example, college students with permanent disabilities can have their student loans forgiven, and are also eligible for special grants to pay for a note-taker, transportation, and other education-related expenses.

United Kingdom

In the UK, people with disabilities have access to three major types of direct state benefits. You can apply for these programs at your local Benefits Agency Office.

The Disability Living Allowance (DLA) is for adults or children with a disability. Parents or carers can apply on behalf of a child. Payment ranges from 15 to 35 pounds per week. The DLA forms are relatively complex, so, if possible, find an experienced disability advocate to help you fill them out. Some autism support groups have DLA experts on staff, as may your local council. Adults may be able to do some paid work while receiving DLA.

Parents and others caring for a child who receives DLA can apply for the Attendants Allowance (also called the Carers Allowance) program as well.

Any person over five years old who receives DLA can also get a Mobility Allowance, a small sum of money to help them get to appointments and meet general transportation needs.

Your local council may also have its own benefits scheme. These may be direct payments, such as a supplemental housing benefit or tax offsets. A number of supported work schemes are also available for people with disabilities and adults receiving other forms of public assistance. In some cases, these programs are mandatory.

Students pursuing a college degree may find themselves in a "Catch-22" situation: on some occasions benefits officers have decided that, if they are well enough to go to college, they're well enough to work, and have canceled their benefits. You can appeal these and other unfavorable decisions to a Social Security Appeals Tribunal.

See the report at www.ahead.ie/grants/grants.html#toc for special information about disability benefits in Northern Ireland.

Republic of Ireland

Disability Allowance and Disability Benefit are available in Ireland, but are far from generous. Both are administered via the Department of Social Welfare. Disabled students can continue to receive these benefits while attending third level courses, although they may lose other types of public assistance, such as rent allowance.

Maintenance Grant (a general benefit for poor families) is not affected by these benefits.

Supported work schemes are available, although your earnings may make you lose your disability benefits. The exception is work that the local welfare officer agrees is "rehabilitative" in nature.

A number of scholarship and grant programs are available to assist students with disabilities. See the report at www.ahead.ie/grants/grants.html#toc for more information.

Australia

A variety of income support programs are available to Australian citizens, including direct financial assistance for adults with disabilities, parents caring for children with disabilities, single parents, unemployed single adults, youth and students. Programs related specifically to disabled citizens and their families include:

  • Disability Support Pension
  • Related Wife Pension
  • Sickness Allowance
  • Mobility Allowance
  • Carer Payment
  • Child Disability Allowance

Employment programs for people with disabilities are many and varied, including the Supported Wage System (SWS), which brings the earnings of disabled workers in sheltered workshops or other types of supported or low-wage employment closer to the livability range.

Indirect benefits may also be available under the Disability Services Act in the areas of education, work, recreation, and more.

To apply for benefits or disability services, contact your local Department of Family and Community Services.

New Zealand

Direct benefits in New Zealand are similar to those provided in Australia, although the payments have historically been much lower. Domestic Purposes Benefit is for single parents. There are also a number of additional services available to the disabled and their carers, including training schemes, supported employment, and recreational assistance. The social safety net in New Zealand is currently being revamped, but services for people with disabilities are actually expected to expand.

To apply for benefits or services, contact your local Ministry of Social Welfare office, which runs the Income Support program. If you need help with paperwork or appeals, Beneficiary Advisory Services (http://canterbury.cyberplace.org.nz/community/bas.html) in Christchurch provides assistance and advocacy, as do a number of disability advocacy groups, particularly the information clearinghouse Disability Information Service (http://canterbury.cyberplace.co.nz/community/dis.html).

Indirect financial help

In the US, tax deductions have replaced direct financial assistance to the poor in many cases. Since these benefits are provided but once a year, they are less convenient, but families coping with the high cost of disability care should take advantage of them.

One of the most important tax benefits is the medical deduction available on your federal tax forms. You can write off not only the direct cost of doctors' visits not covered by health insurance, but also your insurance co-payments and deductible, and out-of-pocket expenses for medications, medical devices, in-home healthcare assistants (presumably including ABA therapists), travel costs related to medical care, and at least some expenses related to attending medical or disability conferences and classes. Special deductions for health-insurance premiums are available for self-employed people.

Because medical deductions limit your federal tax liability, they will also reduce your state income taxes (state taxes are usually based on taxable income figures from your federal form). Some states have additional tax-time benefits for the disabled. In Oregon, for example, each disabled child counts as two dependents.

Another important federal tax benefit is the Earned Income Credit (EIC) program. This benefit for the working poor can actually supplement your earnings with a tax rebate, not just a deduction.

Mortgage interest is also tax-deductible, as most people are aware. Since your home is usually not considered an asset when determining eligibility for direct financial assistance, this makes home ownership particularly attractive to disabled adults and to families who expect to provide care for a child with a PDD into adulthood. Some banks and credit unions have special mortgage programs for low- and moderate-income families. Given the strong financial benefits of home ownership, including the opportunity to keep your housing costs from going up in the future, purchasing a house is very advisable.

Very low income families, including adults with PDDs who rely on SSI or fixed-income trusts, may be able to get additional help in reaching the goal of home ownership from organizations like Habitat for Humanity or Franciscan Enterprises.

Help with medications

Low-income patients may be able to get their medications for free just by providing documentation to charitable programs run by pharmaceutical companies. In the US, the Pharmaceutical Manufacturers Association publishes a directory of indigent programs. Doctors can get a copy of the PMA's official guide by calling (800) PMA-INFO. Alternatively, you or your doctor can call the company that makes your medication directly to find out about its indigent patient program:

Pharmaceutical Company Phone Number
3M Pharmaceuticals (800) 328-0255
Allergan Prescription (800) 347-4500
Alza Pharmaceuticals (415) 962-4243
Amgen, Inc. (800) 272-9376
Astra U.S.A., Inc. (800) 488-3247
Berlex (800) 423-7539
Boehringer Ingleheim (203) 798-4131
Bristol Myers Squibb (800) 736-0003
Burroughs-Wellcome (800) 722-9294
Ciba-Geigy Patient Support Program (800) 257-3273 or
(908) 277-5849
Eli-Lilly (317) 276-2950
Genetech, Inc. (800) 879-4747
Glaxo, Inc. (800) 452-7677
Hoechst-Roussel (800) 776-5463
Hoffman-Larouche (800) 526-6367
Ici-Stuart (302) 886-2231
Immunex Corp. (800) 321-4669
Janssen (800) 253-3682
Johnson & Johnson (800) 447-3437
J&J (Janssen) (908) 524-9409
Knoll (800) 526-0710
Lederle (800) 526-7870
Lilly Cares Program (800) 545-6962
Marion Merrel Dow (800) 362-7466
McNeil Pharmaceuticals (800) 682-6532
Merck Human Health (800) 672-6372
Miles (800) 998-9180
Ortho Pharmaceuticals (800) 682-6532
Parke-Davis (202) 540-2000
Pfizer Indigent Patient Program (800) 646-4455
Pharmacia, Inc. (800) 795-9759
Proctor & Gamble (800) 448-4878
Rhone-Poulenc Rorer (610) 454-8298
Roche Labs (800) 285-4484
Roxane Labs (800) 274-8651
Sandoz (800) 937-6673
Sanofi Winthrop (800) 446-6267
Schering Labs (800) 521-7157
Searle (800) 542-2526
Serono (617) 982-9000
SmithKline Access to Care Program (800) 546-0420
(patient requests) or
(215) 751-5722
(physician requests)
Solvay Patient Assistance Program (800) 788-9277
Survanta Lifeline (800) 922-3255
Syntex Labs (800) 822-8255
UpJohn Co. (800) 242-7014
Wyeth-Ayerst (703) 706-5933
Zeneca Pharmaceuticals (800) 456-5678

An organization called the Medicine Program (573-778-1118, help@themedicineprogram.com , www.themedicineprogram.com) can help you and your doctors ensure that you can sign up with indigent patient programs for medications.

Most of these programs require that you have no insurance coverage for outpatient prescription drugs, that purchasing the medication at its retail price would be a hardship for you due to your income and/or expenses, and that you do not qualify for a government or third-party program that can pay for the prescription.

Another source for free medications is your physician's sample cabinet. All you have to do is ask, and hope that the pharmaceutical representative has paid a recent visit. Samples can help tide you over rough financial patches, but you can't rely on getting them monthly.

In some cases, you can reduce the cost of your monthly medication bill by using a mail-order or online pharmacy (see the section "Mail-order medications," later in this chapter).

Miscellaneous discounts

Don't forget, adults with PDDs, children with PDDs, and sometimes, by extension, their families may be eligible for a variety of discounts and special access programs. For example, the US National Parks Service offers a lifelong pass that gives disabled individuals free entry to all national parks, as well as half-price camping privileges. If the recipient is a child, her family also gets the discount. Disneyland, Disneyworld, and many other theme parks have special perks for people with disabilities, such as not having to wait in line for attractions.

There are a number of programs around the world that help disabled people get access to computers and the Internet. One that offers free computers is Minneapolis, Minnesota-based DRAGnet. You can reach them at (612) 378-9796, fax (612) 378-9794, gille027@tc.umn.edu.

If you need medical assistance in a location far from home but can't afford the cost of a flight or hotel, here are some resources that may be able to help in the US or Canada:

  • AirCare Alliance (referrals for TWA Operations Liftoff and AirLifeLine), (800) 296-1217
  • AirLifeLine, (916) 429-2166 or (800) 446-1231
  • Corporate Angel (arranges flights on corporate jets for patients), (914) 328-1313
  • Miles for Kids in Need, (817) 963-8118
  • Continental Care Force, (713) 261-6626
  • Wings of Freedom (negotiates with commercial airlines for low-cost tickets), (504) 857-0727
  • National Association of Hospitality Houses, (800) 524-9730

Similar corporate programs may be available in Europe, Australia, and New Zealand. Contact the public relations office of your national airline to find out more. You may also be eligible for an emergency travel grant from a social services agency to cover these needs.


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